United Hospital Fund Publishes Two Guides for Family Caregivers and Health Care Providers to Improve How Care Is Coordinated

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Available on www.NextStepinCare.org, Free Guides Aim to Promote Safety and Efficiency



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In a complex and rapidly changing health care system, patients with chronic illnesses often receive services and support from multiple health care and social service providers. These services and supports need to be aligned in the process known as care coordination. While professionals are responsible for much of this care coordination, family caregivers often have significant roles to play, especially in the community. United Hospital Fund has published two guides to improve partnerships between these professionals and family caregivers.

Currently, the division of responsibility for aligning all the elements of care is often unclear. What is the role of a professional care coordinator, and what should the patient and family caregiver expect to manage on their own? Available on the Fund’s Next Step in Care website, the two new guides focus on these questions, highlighting ways to address the different perspectives of family caregivers and professionals.

The goal of care coordination is not just to bring together clinical specialties and services, but also to link physical and behavioral health care, and integrate social and community services, when appropriate. Two major challenges in realizing the goals of care coordination are:

  • Patients with serious and chronic health conditions and their family caregivers are not fully aware of changes in the broader health care landscape, such as patient-centered medical homes, Medicaid long-term care plans, or accountable care organizations, and what these changes mean to them. They may encounter several people with titles like care coordinator or case manager and not know the roles and responsibilities of these professionals.
  • Professional care coordinators need to partner effectively with family caregivers, who have major responsibilities for care coordination in the community but are often not included on the care team.

The first United Hospital Fund guide, A Family Caregiver’s Guide to Care Coordination, provides basic information and guidance about who professional care coordinators are, how their roles may differ depending on the setting, and how they can help improve care. It provides practical advice and examples of how care coordinators and family caregivers can work effectively together. Available in four languages (English, Spanish, Chinese, and Russian), the free guide also presents a list of questions that family caregivers can ask care coordinators, as well as tips for staying organized. For example, family caregivers can ask: What parts of my family member’s care are you going to coordinate? And what do you see as my role in care coordination?

The second, A Professional Care Coordinator’s Guide to Partnering with Family Caregivers, provides information health care professionals need to know to better work with family caregivers. While there is no standard definition of what constitutes care coordination, the guide identifies some common elements and explains several essential roles. It provides scenarios of challenges family caregivers might face that could affect patient care and identifies other factors professional care coordinators should think about when working with family caregivers. The guide then offers a series of steps in communication that can provide structure to better develop rapport between care coordinators and family caregivers. For example, the guide urges care coordinators to create realistic expectations about access to services and length of time services such as home care may be available.

“We created these guides because we have heard repeatedly from both health care providers and family caregivers about the challenges they face in coordinating care in a very complex and rapidly changing system,” said Carol Levine, director of the Families and Health Care Project at United Hospital Fund. “Our research and discussions with experts in care coordination made us aware that care coordinators and family caregivers may have different ideas about who is doing what and where responsibilities begin and end. Our approach—preparing complementary guides for the professional and layperson, who need to work together to coordinate the care of a chronically ill person—aims to bridge this gap.”

The guides are the latest additions to the Next Step in Care website, www.nextstepincare.org, which was created by the Fund to improve the working relationship between family caregivers and health care providers, especially during patients’ transitions between care settings (such as going from hospital to home). The website offers a range of free guides and checklists, most intended for family caregivers of persons with serious illness, with others specifically for health care providers.

An estimated 42 million Americans, or one in five adults, are family caregivers—defined as relatives, partners, friends, or neighbors who provide or manage full- or part-time care to a chronically ill or disabled person. Family caregivers are an essential part of the health care workforce, providing 80 percent of chronic and long-term care in the U.S., and pressures on them are growing. Shorter hospital stays and increased use of outpatient procedures—changes that have increased the effectiveness of medical care in many ways—have shifted responsibility from paid to unpaid providers of care, increasing burdens on family caregivers.

A Family Caregiver’s Guide to Care Coordination is available at http://nextstepincare.org/Caregiver_Home/Care_Coordination/. A Professional Care Coordinator’s Guide to Partnering with Family Caregivers is available at http://nextstepincare.org/Provider_Home/care_coordination/ .


About the United Hospital Fund: The United Hospital Fund is a health services research and philanthropic organization whose primary mission is to shape positive change in health care for the people of New York. The Fund’s Families and Health Care Project works to advance public and professional understanding of the crucial role of family caregivers in the health care system. Learn more at www.uhfnyc.org.

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